Azoospermia support - Part 2

[WhiskeyInTheJar33]

@2022ttc
@Ljp2022
@lemons44
@IslaO
@Carla2601
@TheFanciestPants
@HoustG
@Sleeter0893
@Creatingspace
@Nats140
@pomdownunder1
@Annies1992
@Lily1994

As the old thread is almost full, I thought I'd start up a part 2 so that we can all continue our journeys together!
Apologies if I have missed anyone x

Hi @Disco24 it really feels impossible to prepare! So many hurdles just to get to the first appointment. It sounds like our timings might be quite similar though. Were you seen in your local clinic before being referred to UCLH? Or are you going privately? We have our first appointment with Bourn Hall in June, after all the initial work and referral from the local fertility clinic.
I read your earlier post and see you're going straight for donor sperm so I'd imagine your journey might be a lot quicker. We're hoping to try for SSR initially, but OH has recently said he'd be happy to try for donor sperm if this doesn't work - this alone feels like a huge step as for a while he didn't think he could accept it.
June isn't far away now! I'm literally counting down the days lol**

@Magix86 sorry to hear you are having a tough time :( this journey unfortunately is just so tough...sometimes when you feel finally progress is happening then you go again some steps backwards...but i trust eventually we will get there somehow! Not sure if this helps, but this is what I tell to myself every day.

You did well posting here :) we are all on the same boat, so we completely understand how you are feeling. Hope you get some positive news very soon! Sending you a hug from here!❤

@Disco24 glad to here you managed to get an earlier appointment! That's great new for you.

We also have some positive update. Quick recap on us, my husband was diagnosed with non-obstructive azoospermia some months ago.

After we went to our first fertility clinic appointment with NHS back in April, my husband was included in the waiting list for MTESE and they told us estimated waiting time was 6 months. However, we got a phone call a couple of days ago saying that they are aiming to do MTESE within 3 months so he needs to do asap some tests.

Also in the meantime, I had some scans and they told me my egg look big and good quality (was a bit lost when they told me this, but I guess this is a good sign). Also this made me feel relieved since I checked my ovarian reserve some months ago and it was normal but below the average for my age, and I have been quite worried about this.

So let's see how things progress. I have been okish these months, but now that MTESE procedure is getting closer I am getting very nervous as I am conscious of some difficult decisions that might need to be taken afterwards...I try to be positive...but unfortunately always keeping in mind the success statistics for our case...

@Magix86 That’s a huge step! I’m glad you have the options, although sometimes that’s overwhelming it itself 😅 … every little appointment is a step closer so I understand counting down!

We’re going NHS route, but as we’re in London, UCLH is a hospital in our catchment area so I requested there for my referral.

@Blue234 thats great news that it’s sooner! And always good to get some positive updates.

@Blue234 your words have really helped yes, thank you so much for sharing this ❤️ sounds good news for your eggs - from everything I've read it's more about the quality rather than the amh results anyway. Completely understand the worry about decisions after the MTESE, but as you say, take one step at a time. It's great your husband is being seen earlier than expected. Are they going straight for MTESE? I wondered if they had to try tesa or pesa first for some reason. I think MTESE has higher success rates? We haven't got to those discussions yet so that's all a bit unfamiliar to me!

@Disco24 - absolutely! Although I'd prefer more options to fewer haha. Wishing you all the best for your first appointment- let us know how it goes ❤️

Hi all,

I can’t tell you how grateful I am for this thread!

This is my story:

DH also having NOA. After a successful Microtese 2 years ago I have been through 4 egg retrievals, 1 failed egg retrieval round and 3 failed transfers.

I’m 38 and a poor responder to stims, with an egg reserve on the low end too.

We did genetics on each of the 2 last rounds and every time we were lucky enough to have 1 healthy embryo to transfer, however with no luck yet. The clinic cannot explain why it hasn’t happened yet, since everything looked fine the last two times. However they mentioned that NOA sperm is always considered of low quality.

It’s also been hard trying to not read into symptoms after each transfer but impossible to not get excited to again get the heart dropping to my feet…

We currently have 4 frozen eggs and several vials of sperm and next week they will do the ICSI.

I’m trying to keep calm but it’s difficult…also starting to worry about age.

I’m doing acupuncture which is being absolutely awesome to calm the nerves.

I wish you all the best and send you a hug, thank you for sharing your stories and experiences

Hello guys

I have dipped out a bit from reading everyones updates for a while, just as I found myself getting a bit obsessive, and found myself in quite a good place mentally so did not want to rock the boat.

Just had a read back of a few pages and its a bit of a mixed bag, my heart really goes out to those who just seem to get blow after blow in this process. It just is not fair.

My husband has his NHS MTESE appointment in 6 weeks, much sooner than expected. I have no idea about turnaround for IVF after that, the clinic said it is not usually "very long" but that is a bit ambiguous, what is everyone else's experiences?

I have an IVF question if anyone can help. So, when they say "1 cycle" that includes everything, the stims, the egg retrieval, making the embryo, popping the embryo in etc. It says you are meant to wait 6 weeks between each full cycle, but what about if it is just the embryo transfer? Say the first cycle makes 4 embryos, could you back-to-back every month implant the embryo's (assuming the embryos don't stick) or does it need to wait for a period cycle in between?

Hi all,

Thank you so much for the kind comments after my failed FET. I didn't reply at the time but they meant a lot 💗

Just been catching up on all the messages.

@Magix86 has there been any further update on the suspected polyp? I am so angry on your behalf that they didn't act on this sooner. I'm sorry that it's literally been one thing after the other for you. It's soo frustrating when clinics make mistakes like mislabelling bloods 😡 i know human error is a thing but when you're going through this difficult journey you just need people to get things right so it's not added stress.

Thanks for sharing your story @Amy194 I'm wishing you all the best for your IVF.

@Appl3Pips @StarJasmine93
Keeping everything crossed that the anatrozole works for you both. That would just be amazing if it resulted in sperm in semen. I'm really rooting for it to work.

@Disco24 good luck for your appointment in June. Let us know how it goes.

@OfTheForest sorry to hear you've had failed transfers. We've also now had 3 failed transfers and it's tough. I do wonder if it's to do with the sperm being micro tese but then I think if the sperm and egg made a day 5 blast it must be ok?? Plus a fair few ladies on this group have had success on the first transfer. I figured I think I'm just unlucky. Have you had other tests to check for reasons why implantation may fail?

@wateringcanface that's amazing news about the 6 week wait. I'm sure that will go quickly. If you have a round of IVF and they put an embryo back in and it fails, I think most clinics want you to have a normal menstrual cycle and period before starting with the frozen embryo transfer. This is where it then differs as it will depend if you're having a medicated or natural FET. I'm having medicated so the wait between my transfers is longer because I have to have a 'preparation cycle' where they give me a down regulation injection to shut down all my hormones, then I have a period and then I start medication for the transfer. So my FETs go over two months. However the ladies on the FET thread I was on who were having natural FETs were doing them one after the other, because with a natural FET you just have a normal cycle. So after a failed transfer they would transfer another embryo the next month. Hope that helps xx

@OfTheForest I'm sorry to hear about your transfers. I'm afraid I don't have much else to say as we haven't got to that part yet, but it must be so difficult. I also find acupuncture wonderfully calming. I wish you all the best for your 4 frozen eggs!
@wateringcanface great news you have the mtese booked in!

@lemons44 it's good to hear from you, I hope you've been doing OK. Thank you for your message. We had our second lot of genetic bloods back really quickly and confirmed that it's only me that's a carrier so that's one weight lifted! In terms of the polyp/folds of skin(?!) I'm now waiting for a hysteroscopy, but no idea how long the wait is. My understanding is that I can probably still go ahead with an egg collection but I'd need to wait for any transfer - does that sound right?

OH had a urology appointment for a lump/hydrocele, and was told he'd be referred on to andrology as they can't help. Then he received the clinic letter saying no further action and he's discharged - so no referral to andrology! Finding everything really quite draining lol but at least it's now only a week and a half until we see dr wiseman at bourn hall x

Hi @Magix86 that's really good you have that weight lifted.
I hope the wait for the hysteroscopy isn't very long. I can't see why you couldn't do an egg collection because that only needs your ovaries and not your uterus. I think it's a positive thing having it because at least they will be able to have a really good look inside your uterus so when you do have a transfer you can rest easy that your womb is good and ready to receive a precious embryo. If they find a polyp whilst looking so you know if they can remove it there and then?

Do they know how big the hydrocele is? I just wondered as I know not all of them cause issues so may be why the andrology said he didn't need an appointment.

It must be frustrating though being passed pillar to post. I still find it strange how compartmentalised all the divisions are like andrology, urology, gynaecology, IVF.. wouldn't it be so much easier if it was one team and they all talked to each other xx

@Magix86 thank you for your good wishes! I also think that you’ll probably be able to do the egg retrieval while you wait for the hysteroscopy so you’ll be able to see some progress.
@lemons44 I’m sorry to hear that you’ve also had 3 failed transfers. Have you got genetic testing done on the blastocysts? I did but still I had to do 1 egg collection per transfer as my egg reserve is low.

Yesterday I got really bad news…none of the eggs progressed so no embryos at all. I’m devastated.

Dr called today and said that what happened might indicate that the quality of my eggs is the main issue, which left me shocked.
Last year I did 3 egg retrievals and one transfer so I argued that perhaps it was too much for my body but he said no.
In the end we agreed to do a last attempt of two egg retrievals for batching.

I’m reading your comments and wanted to ask for advice…I guess that my uterus is OK. I have a myoma but got told that due to it’s size and situation it wouldn’t cause any problem. Lining was always good… @lemons44 did you ever get any tests that explained why the implantation failed? I haven’t heard of that.
Hopefully our 4th attempt will be the lucky one 💐
Also, if anyone else is on my situation on low egg reserve & bad egg quality…do you have any advice in terms of vitamins or anything that could help at all? Sending a big hug to everyone xxx

@OfTheForest so sorry to hear this, it sounds like a really difficult few years for you.
Not in the same place as you yet as we are still waiting for medication/MTese for NOA but I have been told that my egg reserve is low too. I haven't explored this any further with doctors yet but I have read 'it Starts with an Egg' and they have an advanced plan of vitamin recommendations for women trying to conceive through IVF with a low egg reserve. It took me a while to get my hands on some of them mind!

Hope you are doing ok @2022ttc xxx

@OfTheForest I am so so sorry to hear this. What absolutely heartbreaking news for you ☹️ I hope you're looking after yourself.
I've just sent you a PM with some information on tests x

@sackofpotatoes123 would you mind sharing it please? I’ve just bought some supplements today to add to the ones that I’m taking, from reading several articles. So it would be great to cross check them x

@sackofpotatoes123 hope you're well. I think I'm living in a state of denial / ignorance about this whole situation. Am waiting for my husband to make an appt to reschedule the MTese but I can't face having those conversations repeatedly as it's painful. How are things for you?

@everyone hope you're all well x

@lemons44 thanks, I hope it's not too long for the hysteroscopy. I had one before and found it highly traumatising so really not looking forward to it 😕 the actual procedure was fine but it felt like the doctor slipped with one of the tools in me and shouted out "oh shit" before carrying on. He never explained what happened and its haunted me ever since as I was too afraid to ask at the time.

They can remove any polyp there and then so that will be good.

In terms of the hydrocele I don't think it's very big but not too sure. We're hoping Dr wiseman will be able to check everything out in more detail.

Thanks @OfTheForest it will be a big relief to get to the egg collection. I don't mind having to wait a little for transfer but I'm now 37 and wanting my eggs out ASAP lol!
I'm also so so sorry to hear your news. Really hoping the 4th attempt is the one for you🙏

For vitamins/supplements, I've been taking proceive max plus 2000mg omega 3. I had been adding wheatgrass daily too but stopped for a couple of weeks - need to start again! I started acupuncture some weeks ago and hoping this is also doing some good. I also have the book it starts with the egg but haven't read through it just yet...that might be my reading this weekend.

Sending love to you all xx

While I don't like reading too much into stuff like this as it can lead to obsession, but I've read a few times that long term ttc and repeated failed transfers can be an autoimmune response, and that when they've taken steroids etc they've conceived. Obviously I'm not planning on taking steroids, but to reduce inflammation and any dodgy immune responses I'm planning on following a anti inflammatory diet and taking natural immune modulating medication such as Royal jelly, cod liver, curcucmin etc in the weeks running up to ivf.

I've got no known immune issues, but it's fairly easy to follow and can only do good.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9570802/

Worth looking up. As I said, fairly easy to follow, basically low carb plenty fruit, veg, legumes and fish, and plenty of good fats.

Even if it makes so difference to fertility, it will still do your body good regardless.

@wateringcanface before my last transfer my consultant got me to do the NK (natural killer) Cells test, which is exactly what you are describing! I have an auto immune condition and have a strong family history of auto immune conditions. Turns out I do have slightly higher than average NK Cells so my last transfer I had steroids and an intralipid infusion and will do this on every transfer going forward. Thanks so much for sharing that link I am going to look at the diet.

@wateringcanface that's good that they can remove any polyps there and then. Gosh the last one sounds awful I'm so sorry you had to go through that. Perhaps tell them before the next one that you had a traumatising one last time and need them to go slow and gentle, describing what they are doing as they go. I had a 3D sis scan and the nurse was brilliant at describing things as she went so I felt like I knew what was happening and it really helped my anxiety.

xx

Sorry I was supposed to tag @Magix86 xx

@2022ttc how has your OH been coping lately? I really hope that time has been a bit of a healer for him the last few months. Sending you a massive hug I know how hard this all is for you xx

@lemons44 I think he's in a much better place than he was a month ago. We are actually at UCLH today picking up some more Anastrozole. He said to me this week he wouldn't be taking the meds if he had no intention for the MTese. We have booked a nice holiday for next month and once we are back we will give Dr Ramsay a call to book it in. I feel a bit nervous reading all the posts recently as it's really never over is it? You'd think retrieving sperm is the difficult part but there's so much more to it after that. I don't know if it means much but when I pray, I pray for all of us on here struggling - I hope things get easier for us all x

@lemons44

Immune issues are so common these days, it makes sense to me for doctors to investigate this earlier with infertility issues, but some of the stories I've read from women they were years down the line till they looked into it.

Also when I said "obviously I won't take steroids" I meant I wouldn't attempt to self medicate, if a doctor told me to take then I would 😆

Some natural supplements mimic a low dose effect of steroids so I'm going to look into them more

Thank you so much for all the info @lemons44 @Magix86 I bought some supplements yesterday

@wateringcanface great info too, thanks! That actually resonates a lot with me. I have multiple food intolerances and inflammation is a constant issue for me. I’m gonna look into the anti inflammatory diet as well. Like you say, it can cause any harm and it might help!

@2022ttcDo you know why he isn’t keen on having the mTESE? My husband was quite nervous about it but then he said that it wasn’t as bad as he thought. Going on a holiday is a great idea to relax and get out of it all for a bit so I hope that it will give you both renewed strength x